Have Chronic Pain? Send Us Your Story

As September approaches, we are all reminded it is Pain Awareness Month. We believe it is a month to additional voice to people in pain, their loved ones, people who treat it, companies who provide treatments and others.

So we’d like to hear your story which we might publish as commentary on the National Pain Report.

In the years we’ve been covering chronic pain; it’s hard to remember a time that is more challenging.

·The National Pain Strategy–which was adopted with such fanfare last year—continues to dawdle in the federal bureaucracy. The promised research and education have not even begun yet.

·The opioid controversy has intensified, if anything. Politicians continue to demagogue the issue. Supply is being impacted. Physicians are prescribing less and patients’ traditional access to them for pain has been impacted. And it doesn’t look like it’s going to change.

·Alternatives to opioids are not being developed and pain patients are increasingly being left to fend for themselves in order to go about their daily lives.

·Non-traditional therapies are being promoted—as patients continue to look for alternatives.

So what’s a chronic pain sufferer/warrior/patient to do?

What have you been doing?

We’d like to share some of the personal experiences that our readers have had as they deal with chronic pain.

If you’d like to share your story–we’d love to consider publishing it.

Please send me an email to: editor@nationalpainreport.com

What we are looking for is 500-to-700 word blog:

1.What is the cause of chronic pain for you (or your loved one or patient)?

2.How it has impacted your life?

3.What you’re doing to treat it/deal with it?

4.What other chronic pain patients/sufferers/warriors can learn from it.

We will be happy to help you craft your “story” if you haven’t written anything before. We may not publish everyone’s story–but will publish a cross-section that hopefully will inform and perhaps inspire our readers.

Thank you.

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The idea of sharing my story sounds frightening since I haven’t talked about it for many years, how I ended up with neurogenic pain.
I was a floral designer in 2003 working to make my daughters a nest egg for their college education. I had a tickle in my nose and sneezed so hard that a small shock ran down my arm and the tips of my pinky fingers felt numb. The fact that I was talked into seeing my family doctor for the numbness that was still active 4 weeks later, what could he do for me?
Here I am at his office with my 8 year old daughter, he is insisting that I allow him to perform a chiropractic manipulation, and I am saying no to this. Finally I gave in,he promised I would feel better. I lay stomach down on his table as instructed, in a matter of seconds he thrust down on the back of my neck with his very large hands. I yelled out in pain over and over, saw lightening and then must have blacked out for a split second. Immediately nausea set in, dizziness when he helped me sit up. How do I feel? Scared and wanting to lay back down, he left the room. When he came back in and ask how I felt it was,I feel like I’m on a cloud, he wouldn’t let me lay back down but gave me a script for muscle relaxers and said I’d feel better tomorrow. I drive myself and daughter home and get into bed right away. My husband cooked for the girls, I was too sick mostly dizzy. Within a few hours my whole left arm went numb and by the next morning my left leg weakened. The headache and nausea stayed with me for 4 months while I did the EMG, than the MRI than the neurosurgeon. I started dragging my left leg. I was let go at my job, my balance issue made me a liability insurance the flower shop. I was mentally and physically losing my life as I had lived a good life with lots of physical activity, now a surgery. I had an anterior cervical spine disc fusion at the 5-6 level the disc had been thrust into my spinal cord. I woke up from the surgery thinking, ok we’re good. I couldn’t be more wrong, the pain that took over my left side started to show it’s ugly face. They said it was just bursitis, it will subside, 3 months later and many pills/ doctors later I am sent to Temple University in Philadelphia for an official diagnosis. There’s a scar on my cord 3mm at C5-6 it is not going to heal. Go home collect disability and make yourself as comfortable as possible is what the best doctor in the country told me and my husband that day. Right now is where I start to cry and can’t see the keyboard. My family is crushed, my 14 year old became my 8 year olds sub Mom. The rest of my years I spend fighting pain, even had the neuro-stimulator implant and oxycontin doses started to control the pain. The idea of sueing the doctor that did this was squashed when in 2003, the year of all this, PA state made it mandatory to have a certificate of merit for any medical malpractice. What’s that? Oh, one doctor has to say the other doctor caused the injury. That’s not going to happen,not when we’re having a problem with excess malpractice suits in the state. We’ve struggled since then, my girls never got to go to college, my husband works 60 hour weeks so we kept the house. This year the CDC decided to rip my pain medicine from me, 80 mg twice a day was too much for them to further allow
So here I am 57 years old, traveling to the city every month to pay my pain doctor $60 to say hi ? He found a new formula so now I use 4 different methods to help control what I call my, neurogenic pain, if I don’t keep it under control I will die from heart rate and blood pressure problems.
I made it this far I’m not ready to die yet, and some day maybe I will get the oxycontin back so I can function, like I was before the CDC got involved. Not even my best friend knew I was taking it and people can’t understand why I want to take it. I don’t want to, but when you have tried every thing and it’s the only thing that works for your pain, you have no choice…

I am not real articulate , but My pain started March4,1992 when I was in an accident unloading a Chemical tanker Truck. I was knocked down by a hose blowing off the pump. Burned me with TCE and broke my kneck. Which Was not found for almost a year, I have developed SEVERE Arthritis in ALL joints, especially my spine. Have had 2 cervical surgeries. Bones are just crumbling away. I currently have a VERY passionate VA doctor, believe it or not. But he is retireing at the end of month and I am scared to death that my new PCP will want to stop my meds. I currently take Morphine Sulfate 30mg 3xdaily and Oxycodone 10mg 3xdaily Plus 350mg Soma as needed.. I have been on meds for 20+ years and DO NOT abuse them. I know all too well how they allow me to have some life. The Veterans Admin. is leading this BS Opioid Crisis. They are cutting meds DRASTICALLY, some are cut off Completely. Most of the Vet, suicides are due to LACK OF PAIN TREATMENT.!! The guys and gals that gave so much for our nation are just Tortured by allowing them to suffer pain until they feel no hope!!. It dumbfounds me how the CDC won’t even go by their OWN STUDIES! I don’t know if my words make sence, I am not a writer, but my story is right in line with millions of Chronic, inoperable PAIN patients.

It disturbs me that a post on the national pain report would have ads for treatment centers. I know it’s not NPR advertising for them but that’s how pervasive this misguided information on addiction stemming from opiates has become. Let’s call our congress & senate reps and tell them the real story. We need to make our plea for staying on opiates a bigger story than the addiction treatment story they are plastering everywhere. Both problems need treatment. Not just the 30 million addicts in our country but the 100 million chronic pain patients as well. Make your calls and send your emails. Meet with them in person if at all possible. Don’t know who your reps are? Find them here…

Hello my name is Renee’ Mace, and as of 2001, I developed Central Pain Syndrome which is characterized as the worse pain known to man, I was in a 65 mile per hour head on car accident, which left me with broken ribs on my right side back and a semi flail lung. About two weeks after the accident, I noticed something was wrong with both my legs, they felt like they where not getting enough circulation and they feel like ants where crawling on them, Then a month later, I stood up from a couch and my legs buckled from underneath me. Then the pain began, like NO PAIN I have ever experienced. The closest thing that I can describe to people is like in the bone marrow of both my legs, it feels like an infected tooth that the dentist hits with a metal probe, and it radiates out to my skin on both legs. Every year with this disease that I have worsens more from year to year. I have tried every kind of treatment out there, and I mean everything, I even asked on several occasions if my doctor’s could amputate both my legs, but I was informed that the pain is coming from my Brain misfiring, my brain is saying YOU ARE IN PAIN and the only way to get a little relief has been pain medications. When my doctor’s who went to school to become Pain Doctor, tried everything, the only way to give me some relief was pain medications, that’s what they did all the while seeking out new studies and treatments, but then the University of WA and the CDC got involved and fired my wonderful doctor, unfairly I might ad, for giving me pain medications. I am not an addict and I was never one. Today my pain is very high and I have no life what so ever. I have ground down my teeth to nubs and I can not longer visit my family or friends and my life is in bed 24/7. When I had sufficient pain medications, I was able to babysit my grandchildren, walk my dogs and do arts and crafts, today I live minute to minute and it is so hard and scary. I CAN”T GO ON MUCH LONGER, I have know more options since my pain medications have been reduced to a little less than 1/3 of my required amount. SO PLEASE (STOP THE WAR AGAINST PAIN PATIENTS!) We deserve a life too.

I so disagree with the way they are lessening patients prescriptions, especially patients like myself. I am in constant pain and cannot walk on left leg because the pain runs from lower back down to toes. Instead of torturing us they should look at each persons background, X-rays, etc.
Yes, I agree that years ago doctors were just prescribing anything to anyone. But now they should look at some patients a little bit closer. Yes, I understand everyone has different pain levels. Pain management should check blood tests and urine to see that patients have the amount of milligrams they should have in their systems. I have spoken to patients who take a few pills before they have their next appointments, to show doctors they have in system and then they sell their prescriptions to anyone who wants to buy them. That’s disgusting!!!!!!
Please leave us be!!!!!!!